Hi @Hellodolly Good to hear from you. I hope your husband is doing ok on the Azacitadine injections & that you’re doing ok too? Best wishes
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Hello and thank you for your messages.
Thank you for the link to Dr Wiseman’s talk which I have already seen. It was really informative.
It’s good to hear some of you are living well with Chronic myelomonocytic leukaemia ('CMML'). I imagined I would become very ill quickly. I’m on active monitoring presently so apparently this could continue for some time.
As you say it’s a lot to take in but I am reading as much as I can to find out.
Thank you
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Hi @Violetta welcome to this wonderful forum. I’m supporting my husband who was diagnosed with Chronic myelomonocytic leukaemia ('CMML') last year aged 55. It was such a shock and a lot to get our heads around but hubby has come to terms with it now and gets on with life. He’s on wait and watch with bloods every 4 to 6 months now. No symptoms. He changed his diet and has always enjoyed his fitness which he maintains. This forum and in particular the people mentioned above by Chrissy have been fantastic and a great support.
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Hi @Violetta
Chronic myelomonocytic leukaemia ('CMML') is such a varied disease but if you are lucky enough to be on active monitoring, I hope you can soon come to see the benefits of that. When I was first diagnosed at age 58, I felt very angry, frightened, hard done-by (why me?), and information I received at the time suggested 12-18 months median survival and I thought I wouldn’t see 60! And yet here I am, still only on active monitoring and coming up 76! Hoorah!
Chronic myelomonocytic leukaemia ('CMML') can be an indolent, slow burner- type as well as sometimes an aggressive type and it’s good for the clinicians to be able to watch and see how stable things might be. Sadly, treatment options for Chronic myelomonocytic leukaemia ('CMML') are still very limited and not always successful. The downside of such a rare disease is that there’s little opportunity for pharma companies to make a business case for developing new treatments!
Getting your head around it is partly through getting sound information, partly from support wherever you can find it, but mainly simply time!
Hope you can make it to the next Leukaemia Care meeting in May. Quite a few of us attend online and you’d get a warm welcome.
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Hi @Violetta welcome to the forum. I was diagnosed with Chronic myelomonocytic leukaemia ('CMML') in 2021 and currently on watch and wait. I have been very lucky that it has not affected me to much. As everyone says, once you get your head around it and as you can see from the other sufferers on here you are not alone. Take care
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Hi Lyndham, thanks for the message. It’s so good to hear that people who have this illness are doing so well. I’m determined I will be one of those too. I don’t really have any symptoms yet and my first appointment after the initial diagnosis is at the hospital is next week.
Thank you
Vi
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I logged back into this discussion originally to update folk. My OH was doing well his platelets started improving in December 2024 but have been dropping back down for the last couple of months. The hospital have prescribed a quarterly course of vitamin B12 injections which hopefully will improve his blood counts. The haematologist is worried about the cause of his reduced platelet count and has said that if they don’t improve he will need to have another bone marrow biopsy. they haven’t said this, but I believe my concern is the same, has the Azacitidine stopped working and is there a potential that his blast count has increased?
Because his Chronic myelomonocytic leukaemia ('CMML') is “complicated” as they said at the hospital he would possibly need a bone marrow transplant. unfortunately, as I have previously described on this forum, his consultant didn’t exactly sell it to him. i’m not daft I do know that they have to tell you what can go wrong. But my partner only focused on that rather than seeing it as a potential solution. I spent a lot of time researching bone marrow transplants just like other people must have done and the fact that they won’t even consider it if the blast count is too high is very scary as his original blast count was low, I can’t quite remember I think it was 2 back in March 24.
What could be quite useful for him is to actually meet other people who have had a bone marrow transplant who could actually tell him about their real life experience, as he has totally ruled out the possibility. He does keep meeting people who have had or have one form of leukaemia or another including one chap who has Chronic myelomonocytic leukaemia ('CMML') but would not have been a candidate for bone marrow transplant as he’s too old, and two other people who have or have had Acute myeloid leukaemia ('AML') both of whom are younger than him, but neither of these people have had a bone marrow transplant. Unfortunately, he did meet somebody at our local hospital who did have a bone marrow transplant, but had a very rough time. So that just compounded things.
Can’t say too much about which hospitals he has been attending the best I can phrase it is to say we have a big London hospital where he saw a specialist that didn’t sell the idea of a bone marrow transplant to him, along with a small local hospital that have been administering his treatments and monitoring him via their haematologists.
Right now, both of us are pinning our hopes on the vitamin B12. although he is having issues getting it administered, as there doesn’t seem to be any joined up thinking within the NHS these days, the hospital routine blood test found low vitamin B12 and prescribed appropriately. However they seem to want to pass on the responsibility to our GP‘s practice to administer it, they cannot administer it without our GP authorising the hospital to do this, (why) however, our GP practice can’t arrange appointments that easily as the injections have to be done six times on alternate days so you can imagine trying to get that many appointments arranged straight away with either practice nurses or healthcare assistants, Even my routine annual diabetes review done with a healthcare assistant is usually 2 to 3 weeks between when I request and when I get the appointment. It would be so much simpler if our local hospital could administer these injections whilst he’s having chemotherapy as they have already done this for the first course and he has to be there anyway.
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Hi @Hellodolly
So sorry to hear of the difficult situation you are in regarding the possibility of a stem cell transplant. Consultants are right to paint a realistic picture - even if it comes over as negative - of the possible outcomes-especially if your husband has known “complications” which are likely to reduce the chances of a positive outcome. For example, people with a TP53 mutation do not do well with a Stem cell transplant and I’m sure there must be other mutations known to have a poor prognosis. The trouble with your idea of your husband talking to people who have had a successful outcome is that they may have been in a better position to have a transplant than your husband and, of course, people who have come through a transplant with a happy outcome are inevitably likely to be full of praise for it! Sadly, logically, you may not be able to get an opinion from those who haven’t made it through or who have long term chronic illness as a result.
Having been involved for over 16 years with people who have Myelodysplastic syndrome ('MDS') or Chronic myelomonocytic leukaemia ('CMML'), I have seen a huge variation in outcomes but, of course, the folk who attend the online meetings are the ones who have had a positive outcome and are hugely grateful for the opportunity! On balance, I would personally rather have a Stem cell transplant specialist who is not gung ho about a very serious and complex treatment.
Whilst B12 injections will help a nutritional deficiency and relieve any symptoms caused by the deficiency, (if that is a reason for anaemia), they do not treat the root cause of Chronic myelomonocytic leukaemia ('CMML') which is a clonal blood disorder. But I’m sorry to hear that the organisation of getting this treatment is so frustrating. The interplay between B12 and lowered ferritin (iron stores) is complicated and it might be worth checking with the clinicians about how they are monitoring the effect of B12 injections on your husband’s ferritin and other nutrient levels? There’s a charity called the B12 society which has useful info on this.
Hoping your husband’s situation improves. It’s so difficult having to navigate all these treatment options.
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Hello all, further developments after seeing haematology at the local hospital. My other half has had several consecutive blood tests showing reduced platelets and they are continuing to drop. They also are somewhat concerned about the other blood counts and have requested another bone marrow biopsy. I understand and appreciate that after 27 rounds of Azacitidine it may be that this drug has now become counter-productive due to its toxicity, and they have reduced the number of doses for round 28. The additional concern is that the Chronic myelomonocytic leukaemia ('CMML') has converted to Acute myeloid leukaemia ('AML'). But of course we’re not going to know until well after the bone marrow biopsy has been taken and processed. I will be all over this website for the next few weeks trying to glean as much information about Acute myeloid leukaemia ('AML') and its treatments.
I just feel this ‘is this bloke ever gonna get a break in this life’ he never has seemed to have been dealt a decent hand and has had a lifetime of dysfunction, trauma, abuse and drama.
As always, my other half is not discussing any of it! I don’t know if this is down to him not wanting to know or being too scared to find out. i’m inclined to think it’s the former not the latter. The trouble with this is when he does find out more, it will scare him and we will be back to where we were two years ago with him sobbing that he was going to die, I do admit that when we were in this position before it occurred to me that if things did not work out, that would be the case ,not that I was prepared to allow him to believe that I was thinking this way I did my best to bolster and encourage him to believe that the treatments that were offered would be effective, and in actual fact up until this point they have been as we were initially told that if the treatments were ineffective that his prognosis was approximately 18 months and that was two years ago.
Hi hello Dolly. My Chronic myelomonocytic leukaemia ('CMML') appeared in February 2022( symptoms) confirmed by bone marrow biopsy in April 2023. Platelets low lowest figure 35. Neutrophils also low and monocytes higher than normal. Unfortunately I made a silly decision to allow my severely arthritic knee to be treated. Up until the day I entered hospital although my blood tests were abnormal they had been stable for three years hence still on watch and wait. The orthopedic team initially suspected sceptic arthritis and decided to wash out the knee joint. At no time did they find any evidence of a infection just inflammation. I was then administered i.v.antibiotics for 4 weeks with numerous side effects. When I arrived home I was shocked to see the daily blood tests results. The graph was like a map of the Alps. How can platelets counts double then halved in 24 hours? Same with monocytes and other levels in the F.B.C. My point is I now firmly believe my disease will now progress due to the effects of many containers of IV antibiotics. As an aside 48 hours before discharge my haemoglobin was low enough to require a blood transfusion. My knee has not improved at all so all this for absolutely NOTHING but untold damage to my immune system especially gut microbiome. Since discharge, symptoms of a digestive tract bleed have appeared and a skin infection. WHAT A DREADFUL MISTAKE I MADE AGREEING TO THIS TREATMENT. Best wishes Unclejack
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Hi @Hellodolly,
What a lot to be carrying, and the waiting that comes with that is its own particular kind of hard.
What struck me in your post is what you wrote about holding your fears privately while doing everything you can to keep him steady. That’s an enormous thing to do, and it probably takes a toll. You have been his anchor through this - but anchors need somewhere to put it all too. How are you doing?
Since you mentioned you’ll be looking for information about Acute myeloid leukaemia, our pages are here when you’re ready - no pressure to dive in unless you want to, though. And if you ever want to talk any of this through with someone, our Support Line is there for carers and partners just as much as for patients: 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Thinking of you both,
Ceri - Blood Cancer UK Support Services
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@ChrissyD @Jilly20 @Erica @Willow @Lyndam @Logsie and all. Morning all Chronic myelomonocytic leukaemia ('CMML') sufferers. After the saga of my recent 5 week hospital stay things seem to be on the mend. My blood test results were good (routine haematology appointment yesterday). Monocytes stable at 400, haemoglobin slowly recovering now at 97, platelets better than they have been for a long time at 82 neutrophils normal, white cell count normal. Consultant said if haemoglobin does not improve more he may recommend a stomach injection to tackle anaemia. I genuinely believed all those horrendous weeks of iv antibiotics would finish me off. I was told at diagnosis that at that time prognosis was eight months to two years, also I was at high risk of mutations. As I had passed 4 years since all this started I asked what was the likely prognosis now. Consultant replied it could possibly be many years as most levels were very stable! Nothing is certain but very happy to be told that. Especially after the recent hospital experience. Just shows that survival for a long time is achievable. I genuinely believe the foods I eat have helped my situation. Still on watch and wait. Hopefully those who have had a recent diagnosis will find some comfort that all is not lost and a normal life is possible perhaps for many years.
Best wishes Unclejack.
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Oh @Unclejack you’ve made my day!!
After what you have been through you really deserve some positive news.
I think a celebration is in order.
Really be kind to yourself you very special forum buddy.
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So pleased to hear this @Unclejack. You have been through so much. Thank you for sharing. Willow x
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Very positive news @Unclejack
Hoping everything continues to improve for you.
Definitely deserve some positive news after all of the challenges you’ve faced recently.
Take care
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Hi @Unclejack good to hear things have turned around for you. Had my bloods done last month and they are remaining level, so at least no deterioration. I am on antibiotics at the moment for a uti infection. Had to jump through hoops to get through to gp’s and was diagnosed over the phone and antibiotics issued. Well I suppose that is what they call progress. Anyway hope everything now keeps going the right way. Take care
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Hi @Unclejack @sisi @Duncan @DuncanB @Erica @Willow @Logsie @CathyP @Rick @Pierre and all in the Chronic myelomonocytic leukaemia ('CMML') club!
Uncle Jack Really glad to hear all your good news. The antibiotics and being away from your usual good diet certainly caused a big downward blip in your blood counts but excellent news that everything is edging back to normal.
Like Lynda, I’ve just had some blood counts done for my next appt on Monday and everything seems to have improved. 
Hb, white cells, neuts and platelets - all higher than they’ve been for quite a while! No idea why but I’m putting it down to all the purple sprouting broccoli, asparagus and broad beans we’re eating currently from the allotment! It would be nice to have some research looking at the effects of diet and lifestyle after a Chronic myelomonocytic leukaemia ('CMML') diagnosis but there’s no money to be made by pharma companies in proving that these strategies can make a positive difference!
Meanwhile, the better weather has seen us working away on the allotment, planting spuds, sowing seeds, weeding and watering and meeting up with our plot pals who we’ve not seen whilst hibernating in the winter! It’s my happy place! 
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@Lyndam Apparently I’m only allowed to add 10 names in a post so see previous one!
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Hi @ChrissyD thanks for your update and I am pleased to hear that your bloods seem to have improved, another cause for celebration.
Your allotment certainly seems to be bearing fruit, or actually wonderful veg, and you are planting produce and sewing seeds for future crops.
I had to laugh that you and your ‘plot pals’ are coming out of hibernation and it is lovely to hear that allotment is your happy place, enjoy, I shall think of you there, xx
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Ahh some lovely good news from you @Unclejack, @Lyndam and @ChrissyD! Really great to read you’ve all had better blood test results, thank you all for sharing as it’s really heartening.
I happen to agree that what we eat can really benefit us and our blood cells in such simple ways. It’s figuring out the proportions of the healthy stuff that seems so tricky to perfect isn’t it?! For what it’s worth, I’ve been enjoying (vegan) kefir again recently which makes my tummy gurgle a bit as its probiotics do their thing. Practice makes perfect and all that…
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